Shane Moynihan (Dublin Mid West, Fianna Fail)

Like other colleagues, I want to raise not only the awful deteriorating disease that is Duchenne muscular dystrophy, but also the need for an approach to an early access programme along the lines of what is in Belgium, the UK and the US. In my constituency, there are two very unique and special boys, Conor and Dean Thompson, who have been spearheading the Build for the Boys campaign. Speaking to families like theirs last week when they were here about the impact it has on parents watching their boys deteriorate and lose that ability to walk over time, when there is that access to medication, brings into focus our role as legislators to ensure we keep the pressure on to enable an early access programme. The tragedy is knowing about - to which Deputy Crowe alluded earlier - and having access to givinostat on the island. How do we ensure this story is not replicated for all the other people who suffer from rare diseases?

In the programme for Government, there is a very clear commitment to implement an early access programme. Can a compassionate access scheme be included as part of that, and that the very sensible recommendations of the Mazars report on how to streamline this process, adequately staff it and increase the capacity for communications with patients for access to these drugs be taken on board and prioritised by the Government as a matter of urgency to stop these stories coming to us all the time and to put in place real structures that families can have confidence in, especially when afflicted by rare diseases?

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